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A Gift of Life: Children’s Heart Center vaults to national prominence

By Mark Shwartz

Monday, September 20, 2010

Karina Gomez of San Jose was five months pregnant when her baby was diagnosed with congenital heart block—a rare cardiac abnormality that obstructs the normal flow of electrical impulses regulating heartbeat.

“The doctors said that my baby’s heart rate was so slow that she wouldn’t survive without a pacemaker,” Karina recalls. Implanting a pacemaker in a newborn is a complex operation, and fraught with risk. Karina and her doctors turned to specialists at Lucile Packard Children’s Hospital: V. Mohan Reddy, MD, a pioneer in repairing heart defects in babies, had recently joined the surgical team at the newly founded Children’s Heart Center.

Karina’s daughter, Kassaundra Ramirez, was born on December 11, 2002. When she was just 2 days old, Reddy implanted a tiny pacemaker and attached it to one of the two lower chambers, or ventricles, of her heart. Five months later, he replaced it with a more advanced device wired to both ventricles.

Kassaundra, one of the youngest children in the country with a biventricular pacemaker, is thriving.

At the time, Kassaundra was one of the youngest children in the country with a biventricular pacemaker. More than 50 patients since have received the device at Packard Children’s Hospital, a leading adopter of this relatively new technology that is more commonly used in adults.

Kassaundra’s surgery was a rousing success. Now about to turn 8, she is a vivacious second-grader who enjoys singing and dancing, and even has starred in her own music video.

“You wouldn’t guess by looking at her that she has a pacemaker,” Karina says. “She swims, ice skates, climbs trees—and she loves school, especially math. I can’t find the words to express my gratitude for all that has been done for my daughter. I know Kassaundra has always received the best care possible. They are the best of the best, and I’m grateful to Dr. Reddy and everyone at Packard for giving her this gift of life.”

In the United States, nearly one in every 100 children is born with a heart defect—a total of about 36,000 newborns this year alone.

To help address the needs of this growing population, Packard launched the Children’s Heart Center in 2001 with the ambitious goal of creating a world-class cardiac program to provide comprehensive treatment and care for young patients at all stages of life, from infancy to adulthood.

In less than a decade, the Center has achieved that goal. Earlier this year, U.S. News & World Report ranked Packard fifth on its prestigious list of top-rated pediatric heart programs in the country.

“Many of the other ranked programs have been in existence for over a century,” says Frank Hanley, MD, executive director of the Center and chief of pediatric cardiothoracic surgery at Packard Children’s. “We’ve catapulted ourselves into that upper echelon very quickly, and it’s a reflection of the great team that we’ve been able to assemble.”

Hanley, the Lawrence Crowley, MD, Endowed Professor in Child Health, is widely recognized for developing a unique surgical procedure to correct tetralogy of Fallot, a complicated congenital condition involving multiple heart defects. He and Reddy were the first high-profile heart surgeons recruited by Packard in 2001.

“Dr. Hanley and Dr. Reddy are among the top surgeons in the world,” says Center director Daniel Bernstein, MD, chief of pediatric cardiology at Packard. “They can do procedures that nobody else can do. Because of them, we receive referrals from around the globe.”

Record of Success

Since 2005, Hanley, Reddy, and their colleagues at the Children’s Heart Center have performed nearly 2,500 open-heart surgeries. Impressively, the team has achieved a 98.4 percent survival rate—significantly higher than the national average despite the high acuity of patients’ conditions.

In addition, Center cardiologists have successfully performed thousands of catheterizations—nonsurgical procedures in which a tube is threaded through a vein or artery to correct a cardiovascular defect. In 2005, 9-month-old Noelle Takagi of Menlo Park became the youngest child ever to have a heart valve replaced via catheter.

The Center’s Pediatric Arrhythmia Service, led by Anne M. Dubin, MD, has pioneered another technique called radiofrequency ablation, in which a catheter is used to deliver high-frequency radio waves that burn off unwanted heart tissue. “We’re home to one of the largest heart failure and transplant programs in the country, with the highest success rate for pediatric transplants,” says Bernstein, the Alfred Woodley Salter and Mabel Smith Salter Professor in Pediatrics. Bernstein attributes the Center’s high success rate to the broad spectrum of care provided by a highly trained staff of doctors, nurses, social workers, nutritionists, and therapists.

“This really is a team effort,” he says. “Everyone involved has a major stake in caring for kids with heart disease. That’s what makes it work so well.”Read more about Critical Care.

Dramatic Advances

"Forty years ago, few children with complicated congenital heart problems survived,” Hanley says. “We’ve advanced so far in this field that most patients with cardiac conditions now survive into adulthood. But they’re not cured. They still need ongoing care as adults.”

In fact, the survival rate has improved so dramatically that, for the first time ever, there are now more adult Americans living with congenital heart disease than children. To assist this aging patient population, Packard Children’s and Stanford Hospital have created a special clinic for adults with congenital heart disease. Read more about Lifelong Care.

Training Future Leaders

"As an academic medical center, we have a threefold mission,” says Bernstein. “To provide excellent clinical care, to conduct novel research, and to advance medical education. Training the next generation of pediatric leaders is an important component of pushing the field forward.”

To that end, the Pediatric Cardiology Fellowship Training Program at Packard is second to none, says program director Jeffrey A. Feinstein, MD, MPH.

Faculty and fellows at the Center are also engaged in cutting-edge research, from identifying specific genes that cause heart disease to creating 3-D computer models that help cardiothoracic surgeons design better operations. Read more about Cross-Campus Collaboration.

"We also advance the field by testing new techniques and medications in clinical trials,” Hanley says. “To do that, you need a patient population large enough to arrive at statistically significant conclusions.”

To broaden the patient base, Packard has formed partnerships with other major children’s hospitals in the western United States. “Our outreach affiliate program is a model that we’ve pioneered,” Hanley says. “The benefits are several-fold. We dramatically expand our patient base to allow for robust clinical research, and we provide outstanding surgical expertise to institutions that otherwise might not have access to that level of care.”